14th April, 2009

Well, it's 2 weeks today since we gave Ashling a proper tube feed. Very exciting stuff!

We've had to give her water and medicine through it on some occasions but overall, she's doing quite well on her own. She's still not eating much but she is definitely more interested than ever and has managed a few little bits. She was slowing down a bit last week and we were getting worried but so far she's doing well this week. They say it takes 3-4 weeks for the penny to drop properly and for her appetite to stabilise. One thing she likes for sure is baked beans (like her Daddy) and icecream (like her Mammy); she managed about a tablespoon of baked beans the other evening, which was a major breakthorough and we've been giving her a little icecream most days which she's starting to really like. But as with Ashling's usual trend, nothing changes overnight and she's continuing this progress in baby steps!

It's absolutely fantastic being able to give her the control about when and what she eats. She tells us very clearly when she wants a drink or wants to lick some food (usually salty food like crisps/crackers etc). We let her have whatever she wants, as this is how we've been advised for this transition period. It's like demand breast feeding a baby. After a year and a half of having no input into whether or not she eats, Ashling needs to understand that she can ask for food and her request will be adhered to, irrespective of her choice of food/drink etc (within reason!).

I was really embarrassed the other day cause as I said before, Ashling loves to lick salty food, and hey we're not going to stop her cause then she drinks more! (and that's where she's getting all her calories at the moment). Anyway, I take Ashling to PlayCentre on Wed morning and the kids were having morning tea. I took out Ashling's lunchbox, which is like a fishing tackle box with heaps of sections. In each section, there was some sort of food (namely popcorn, pringles, crackers, fruit, bread and pasta). A little 4 year old sitting near us looked into Ash's lunchbox and said out loud to all the parents and kids "Look at Ashling's lunchbox - it's all junk food!!!). I was absolutely mortified and found myself justifying myself to a 4 year old, telling her to note that Ashling also had fruit, pasta etc. Looking back, it really was hilarious!

These are the times when I know I could explain a few things, but can't be bothered!

Will report back in another week. Cheers!

Success!!!!!

Tis with a glass of vino in hand that I write that Ashling is getting there!!! The progress she's making is phenomonal!

We stopped her last tube feed 3 days ago, following excellent advice that we've been getting from the Feeding Clinic in Austria. Since then she has started really increasing her fluid intake and her drinking has become so much more efficient. She still hasn't really managed to eat much but she's trying incredibly hard and tries something new each day. She is so careful though and can only successfully manage bite and dissolve type of food at the moment. She's loving being in charge of it all though. After a year and a half of getting tube fed, irrespective of whether or not she's wanted it, Ash is now in the driver's seat and she really likes that. She still needs a lot of encouragement and gets very grumpy these days, mostly because she's hungry but she doesn't recognise that feeling.

Overall, we are absolutely thrilled with her progress but she still has a long, long way to go....

Thanks a million for all the ongoing prayers and support xxx

Ps: Took Ash out for a while this arvo and I just couldn't believe how easy it was to bring food for her - took a drink and some crackers for her (to lick!). No tube extention, tape, 60ml syringe, bottle, pureed food , formula milk, sterile water, 10ml syringe.....No, just a drink and a snack! WOO HOO!!!!! Bring it on!